Nee and the girls at Red River, NM
The girls and I on the 4th of JulyJust a note... I am always thinkning and muddling through how best to help Kyla with the challenges that she faces because of CMS, but it seems some seasons make me more intense for the search of community and help than others. I have recently made more contact with others who have CMS or their children have it through facebook. It is so comforting and rewarding to find others who are on this journey with Kyla.
Most recently our concerns with Kyla are her fatigue (late in the day), physical therapy issues (running and walking form), writing fatigue, inattention, and sleep habits.
We are trying to give her mestinon doses somewhat closer together to see if we can help her body adjust to the long summer days.
